Chemo-teach day
I couldn't believe I had to go the hospital in the middle of a pandemic for a 90 minute meeting with a pharmacist to prepare for chemo, when I was choosing not to do chemo.
I decided to document what I learned - both for myself and because at least a few people who read this blog will be as curious about it as I was.
First of all, I am so grateful to feel good about the hospital and clinic/infusion center housed inside the hospital. Every person I've interacted with is friendly and professional. I trust them as they have proven to really do their homework and can talk intelligently about this rare cancer when I'm there. It's a newer, nice looking facility and its only 15 minutes from our home. It just feels good.
Granted - it's a bit hard to get to know people through masks, but I have been really impressed by every single person I've interacted with.
I met with Dr. Kate Jeffers. She's an in-house pharmacist. The purpose of the meeting is to make the patient feel more informed, comfortable, and prepared.
We went through a list of all supplements and herbs I take. I loved how this pharmacist went above and beyond in helping me understand that she, and the institution, are not against supplements and such. I asked about supplemental mushrooms, for example, and she explained that they are processed through the liver, as is the drug I will be starting. They will be keeping an eye on liver enzymes with extensive labs at least once weekly when I start the IVs and, should the liver start showing problems, we can talk about the mushrooms. That's just an example of her expertise and the way they address things that other oncologist chose to know nothing about.
One of my prayers has been to find people I respect to help me navigate all of this. At times, it has felt like I have to know everything about nutrition, supplementation, medications, clinical trials..., because it is so hard to find people who understand and respect both sides. I feel once more that I have been led to resources I can trust and it feels really good. And...I feel totally comfortable calling her to discuss future supplements, IVs, alternative treatments, which is a relief.
I asked a very crucial and pressing question.
Listed on my paperwork says "Chemotherapy Drugs - Belinostat." In our minds, we were choosing this drug instead of chemo. She explained that "chemotherapy" essentially is used for any drug that directly "kills" cancer. This drug does that, so it is chemotherapy. However, it is considered a "Targeted Therapy," instead of the kind of drugs we think of as chemo, that kill any cell that is replicating. Because cancer cells replicate faster than normal cells, the hope is that chemo drugs will kill more cancer than healthy cells. But, because they indiscriminately kill so many cells, the side effects are a lot worse than with a targeted drug designed to kill only particular cells. This drug is called a histone deacetylase (HDAC) inhibitor. HDAC's are enzymes that control histones which are important proteins in the formulations of DNA. Belinostat blocks HDACs so histones cannot be used properly. This interferes with the genetic make-up of cancer cells, leading to cell death. It works specifically for T-Cell Lymphoma because of the cell make-up of the cancer cells.
Possible side-effects from this drug:
- fatigue and tiredness. She says it's important to keep up activities. Don't stay in bed all day!
- changes in taste and appetite. Keep eating healthy. I was encouraged that they focus on a plant-based diet.
- anemia which will be monitored closely.
- decrease in white blood cell count, making me susceptible to infection. Any fever over 100.4 warrants an immediate call to the oncologist. This will be monitored closely in labs so I'll know if I need to be exceptionally careful. Of course, right now we are ridiculously careful because of the pandemic.
-achy feelings, especially 12 - 24 hours after each infusion.
She gave me a refrigerator magnet and wallet card with direct numbers to the oncology nurse and/or oncologist. They want a call with any changes and don't want me to "wait and see" before calling. I appreciated this encouragement as I am a "wait and see" kind-of-a gal and would hesitate to call.
When we start, the protocol will be as such:
Monday mornings - labs drawn, see the oncologist (hopefully or I will have to make an appointment the Thursday or Friday before each treatment week). Then access my port and start the IV. This will take about 4 hours total. Port will stay accessed for the week, limiting swimming and bathing.
Tuesday - Friday - 2 hours daily to get IVs with other labs as warranted.
16 days off.
Redo the 5 day protocol - indefinitely. There have been no clinical trials on people like me who have not "failed" on other treatments so we really have no idea how long this will work. The protocol is to continue on it "until it doesn't work for symptoms anymore." What would come next depends on new treatments, my condition, whether I want to go for a cure or just management of the disease and quality of life at that point...
They automatically give IV drugs to prevent nausea with this drug. It is considered a "moderate risk" drug for nausea, with 30 - 90% of people having that side effect. Then they give a drug to take at home for nausea and another if there is "break through" nausea still. When she heard how sick I was in pregnancy, she decided to use a stronger IV drugs (3 drugs days 1 and 4 and 2 drugs days 2 and 5) to prevent this as studies show that people who had a hard time in pregnancy have a harder time with chemo nausea.
It may take time for my body to adjust as this drug is helping to correct what the bone marrow is producing while cancer cells are dying. The body can "over or under shoot" at first, causing more side effects. Then, it levels off. Also, there is something called Tumor Lysis Syndrome that can happen when cancer cells are dying off faster than the kidneys can process them. The body can produce too much uric acid and go into kidney failure. The best thing is to stay very hydrated and contact them, especially 24 - 48 hours after IVs if I see any changes in symptoms. There is a drug to lower uric acid, if necessary, while the kidneys recover.
Of particular concern for me is that, if this is chemo, do I need to worry about the people around me. I read a study that found chemo drugs showing up in care takers of chemo patients. She reassured me that those studies showed that people dealing with lots of bodily fluids were the ones at risk. I should close the lid when flushing the toilet, avoid sex or use barrier methods, and take other precautions not to share bodily fluids the first 48 hours after an infusion.
As far as my safety - the 5 days of treatment and 5 days after are those when my immune system could be the most compromised.
If I were doing the 5 - 6 drug chemo used for AITL, I would need to avoid my loved ones while doing the chemo, I'd probably be miserable the week after, and I'd need to avoid contact with people the third week so as to prevent infection before starting chemo again. I am so relieved that we have found a gentler and what seems to be safer options, for now. This does not promise a cure but my body is being supported rather than systematically weakened by this treatment. My hope is that the cancer my body made can be healed by that same body, over time and by putting into action all I have learned this 3 years. Reduce toxins on, around, or in me, increase nutrients and nutrient dense healing foods, reduce stress of all kinds, increase joy, detoxify as possible through things like saunas and coffee enemas (not the week of chemo), supplements and herbs. Again - read Radical Remission and Chris Beat Cancer for me on this.
One huge encouragement for today: the pharmacist echoed what we heard from Dr. Shustov in Seattle. I should feel much better on this drug as soon as a week after starting. To think I may feel well enough to start working again and move forward with life. I have felt on hold for a long time. I want to know how to be still and rest but I need to develop new exciting goals for my life.
The immediate future looks personally hopeful when just a few weeks ago I was dreading the next year. Of course we are praying as the pandemic ramps up and promises to get much worse before it gets better.
We pray you stay safe and healthy and that we all are led to wisdom in responding to this scary crisis.
Love and peace to you!!!
I decided to document what I learned - both for myself and because at least a few people who read this blog will be as curious about it as I was.
First of all, I am so grateful to feel good about the hospital and clinic/infusion center housed inside the hospital. Every person I've interacted with is friendly and professional. I trust them as they have proven to really do their homework and can talk intelligently about this rare cancer when I'm there. It's a newer, nice looking facility and its only 15 minutes from our home. It just feels good.
Granted - it's a bit hard to get to know people through masks, but I have been really impressed by every single person I've interacted with.
I met with Dr. Kate Jeffers. She's an in-house pharmacist. The purpose of the meeting is to make the patient feel more informed, comfortable, and prepared.
We went through a list of all supplements and herbs I take. I loved how this pharmacist went above and beyond in helping me understand that she, and the institution, are not against supplements and such. I asked about supplemental mushrooms, for example, and she explained that they are processed through the liver, as is the drug I will be starting. They will be keeping an eye on liver enzymes with extensive labs at least once weekly when I start the IVs and, should the liver start showing problems, we can talk about the mushrooms. That's just an example of her expertise and the way they address things that other oncologist chose to know nothing about.
One of my prayers has been to find people I respect to help me navigate all of this. At times, it has felt like I have to know everything about nutrition, supplementation, medications, clinical trials..., because it is so hard to find people who understand and respect both sides. I feel once more that I have been led to resources I can trust and it feels really good. And...I feel totally comfortable calling her to discuss future supplements, IVs, alternative treatments, which is a relief.
I asked a very crucial and pressing question.
Listed on my paperwork says "Chemotherapy Drugs - Belinostat." In our minds, we were choosing this drug instead of chemo. She explained that "chemotherapy" essentially is used for any drug that directly "kills" cancer. This drug does that, so it is chemotherapy. However, it is considered a "Targeted Therapy," instead of the kind of drugs we think of as chemo, that kill any cell that is replicating. Because cancer cells replicate faster than normal cells, the hope is that chemo drugs will kill more cancer than healthy cells. But, because they indiscriminately kill so many cells, the side effects are a lot worse than with a targeted drug designed to kill only particular cells. This drug is called a histone deacetylase (HDAC) inhibitor. HDAC's are enzymes that control histones which are important proteins in the formulations of DNA. Belinostat blocks HDACs so histones cannot be used properly. This interferes with the genetic make-up of cancer cells, leading to cell death. It works specifically for T-Cell Lymphoma because of the cell make-up of the cancer cells.
Possible side-effects from this drug:
- fatigue and tiredness. She says it's important to keep up activities. Don't stay in bed all day!
- changes in taste and appetite. Keep eating healthy. I was encouraged that they focus on a plant-based diet.
- anemia which will be monitored closely.
- decrease in white blood cell count, making me susceptible to infection. Any fever over 100.4 warrants an immediate call to the oncologist. This will be monitored closely in labs so I'll know if I need to be exceptionally careful. Of course, right now we are ridiculously careful because of the pandemic.
-achy feelings, especially 12 - 24 hours after each infusion.
She gave me a refrigerator magnet and wallet card with direct numbers to the oncology nurse and/or oncologist. They want a call with any changes and don't want me to "wait and see" before calling. I appreciated this encouragement as I am a "wait and see" kind-of-a gal and would hesitate to call.
When we start, the protocol will be as such:
Monday mornings - labs drawn, see the oncologist (hopefully or I will have to make an appointment the Thursday or Friday before each treatment week). Then access my port and start the IV. This will take about 4 hours total. Port will stay accessed for the week, limiting swimming and bathing.
Tuesday - Friday - 2 hours daily to get IVs with other labs as warranted.
16 days off.
Redo the 5 day protocol - indefinitely. There have been no clinical trials on people like me who have not "failed" on other treatments so we really have no idea how long this will work. The protocol is to continue on it "until it doesn't work for symptoms anymore." What would come next depends on new treatments, my condition, whether I want to go for a cure or just management of the disease and quality of life at that point...
They automatically give IV drugs to prevent nausea with this drug. It is considered a "moderate risk" drug for nausea, with 30 - 90% of people having that side effect. Then they give a drug to take at home for nausea and another if there is "break through" nausea still. When she heard how sick I was in pregnancy, she decided to use a stronger IV drugs (3 drugs days 1 and 4 and 2 drugs days 2 and 5) to prevent this as studies show that people who had a hard time in pregnancy have a harder time with chemo nausea.
It may take time for my body to adjust as this drug is helping to correct what the bone marrow is producing while cancer cells are dying. The body can "over or under shoot" at first, causing more side effects. Then, it levels off. Also, there is something called Tumor Lysis Syndrome that can happen when cancer cells are dying off faster than the kidneys can process them. The body can produce too much uric acid and go into kidney failure. The best thing is to stay very hydrated and contact them, especially 24 - 48 hours after IVs if I see any changes in symptoms. There is a drug to lower uric acid, if necessary, while the kidneys recover.
Of particular concern for me is that, if this is chemo, do I need to worry about the people around me. I read a study that found chemo drugs showing up in care takers of chemo patients. She reassured me that those studies showed that people dealing with lots of bodily fluids were the ones at risk. I should close the lid when flushing the toilet, avoid sex or use barrier methods, and take other precautions not to share bodily fluids the first 48 hours after an infusion.
As far as my safety - the 5 days of treatment and 5 days after are those when my immune system could be the most compromised.
If I were doing the 5 - 6 drug chemo used for AITL, I would need to avoid my loved ones while doing the chemo, I'd probably be miserable the week after, and I'd need to avoid contact with people the third week so as to prevent infection before starting chemo again. I am so relieved that we have found a gentler and what seems to be safer options, for now. This does not promise a cure but my body is being supported rather than systematically weakened by this treatment. My hope is that the cancer my body made can be healed by that same body, over time and by putting into action all I have learned this 3 years. Reduce toxins on, around, or in me, increase nutrients and nutrient dense healing foods, reduce stress of all kinds, increase joy, detoxify as possible through things like saunas and coffee enemas (not the week of chemo), supplements and herbs. Again - read Radical Remission and Chris Beat Cancer for me on this.
One huge encouragement for today: the pharmacist echoed what we heard from Dr. Shustov in Seattle. I should feel much better on this drug as soon as a week after starting. To think I may feel well enough to start working again and move forward with life. I have felt on hold for a long time. I want to know how to be still and rest but I need to develop new exciting goals for my life.
The immediate future looks personally hopeful when just a few weeks ago I was dreading the next year. Of course we are praying as the pandemic ramps up and promises to get much worse before it gets better.
We pray you stay safe and healthy and that we all are led to wisdom in responding to this scary crisis.
Love and peace to you!!!
ReplyDeleteThanks Cath for doing this blog, it is good to know what each step of your journey is revealing.
Love you,
Big Sis - Deb